to a friend i haven't met yet

A couple of days ago, a friend told me that her sister was just diagnosed with lung cancer, and that she's going in for a lobectomy the end of August, the same surgery I had about a month ago.

I don't know this woman. I know nothing about her except that we both have the same type of cancer, us and tens of thousands of other people. Still, I feel a connection with her because of our shared... um, let's call it a challenge because anything else sounds fatalistic and self-pitying.

Maybe it's like the connection made by men (okay, women too) who go to war. I know a few Viet Nam vets and they are brothers because of shared experience. They speak the same language. They know things about each other because of where they have been and what they have been through. Their experience changed them, and no one else gets it, unless they've been in Nam.

Cancer is like that, like finding yourself in the middle of a war that you never signed up to fight (hell, you never even got a chance to dodge the draft). There is this bond among cancer survivors. We know stuff that no one else knows unless they've faced cancer. So, this woman is where I was six months ago, newly diagnosed and facing surgery, and in my head I'm talking to her like she's someone I've known all my life. Carrie isn't her name, but let's say it is.

Carrie, you lucked out getting Dr. Ken Evans as a surgeon. He's a wizard with the scalpel and you'll be so pleased when you discover that your incision doesn't have any staples, or even stitches, just a taped-on dressing that may be abandoned after just a couple of days because it heals so quickly. It heals smoothly, without the bumps and puckers that are typical of stitched and stapled incisions.

Carrie, I'd like to tell you about mistakes I made so you can avoid them. You'll probably make a few of your own, but at least I can give you a heads-up on a few that you don't need to subject yourself to:

1. Do not log on to YouTube and watch the videos of lobectomies. They are graphic, gory and absolutely terrifying. They are meant for medical students, not sensitive human beings like you and I. No one needs to see, in full colour, what the inside of their lung looks like.

2. Do not try to be a hero by scrimping on your pain medication. Narcotics are your friend, and there is no danger of addiction when you're taking them for legitimate pain. Further, by not taking them, you risk slowing down your recovery.

3. On the subject of narcotics, be sure to ask for medication to counteract the constipation they will cause. Don't wait until it's a problem because, if you do, then... well, it's a problem. Drink lots of water and don't eat the cheddar cheese you'll find on your lunch tray every day.

4. You'll wake up to find a little clip on your finger (it measures the oxygen saturation in your blood). Do not remove it. If you do, your computer monitor will immediately begin sounding all kinds of alarms and this will just annoy your neighbour patients and the nurse who must rush over to see if you've died.

5. Your visitors may try to make you feel better by telling you a funny story or a joke. They mean well, of course, but this is a mean thing to do to you. Laughing hurts. Tell them to talk only about serious topics, maybe the price of gas or forest fires in the Interior.

6. Your visitors may get bored so, to help them pass the time in a more interesting way, send them out to get coffee for you at Starbucks and one of those delicious sandwiches at the little shop across the street. There's also a Subway at the corner if you're really hungry. They'll appreciate the Vancouver scenery and you'll get a break from hospital food.

7. Be sure to bring your own pyjamas and slippers. You just can't say enough about how bad hospital gowns are for one's morale.

Carrie, that's the really important stuff you need to know to get through this as comfortably as possible. They say a lobectomy is a major surgery, right up there with open-heart, but in fact you'll not find it that hard. Why? Because you'll be so stoned you won't know and won't care what you've been through.

You'll go home with prescriptions for pain medication, and at least for the first week, you'll want to take them regularly. This is fine, but you'll forget what you came into the kitchen for, you'll forget the first chapter of the book you're reading by the time you get to the second chapter, and you'll forget just about everything that anyone's said to you. Make sure you explain to your friends and family that you're not really suddenly stupid, you're just under the influence of some high-powered drugs.

After you stop taking the pain medication, you'll forget that you're recovering from surgery, and you'll absent-mindedly reach for something you dropped on the floor or stretch to get something from a top shelf in a cupboard... and then you'll scream in pain. After a few times of doing this to yourself, you'll pay more attention.

Plan to sleep either in a recliner chair or propped up with lots of pillows in bed. At first, lying flat in bed is not only painful but it's damned near impossible to get back up. Under no circumstances should you get in the bath tub; you risk being stuck there for a couple of weeks at least.

You will likely develop an annoying little cough. They never mentioned this in the hospital, but I've since learned that it's quite normal and it does go away. This little cough isn't painful, but sneezing certainly is, much like it would be if you had broken ribs. It's an excellent excuse to avoid all dusting and vacuuming.
 
For me, the hardest part is the slowness of the recovery. Three weeks would have been a piece of cake, but supposedly it will be three months until I'm back to some semblance of normal. The best part is looking back and realizing that, every day, I'm getting better. And you will too.

the lobectomy papers: part 4

Ghost in the Machine

In spite of the high technology and professional staff, things do not always run smoothly in Stepdown.

Let's look at the computer monitoring system for patients. Each patient's computer can sound an alarm to warn nursing staff of any abnormal readings.

This is an excellent tool to provide a timely heads-up if a patient happens to be having a cardiac event or if they've, um, died, causing the signals to stop altogether.

An excellent tool, providing it functions as it should. But, we all know computers are prone to little glitches, ghosts in the machine so to speak. The one connected to the patient on my immediate left is not an exception.

The patient's heart rate, pulse or whatever reading jumps from 117 to 124, then dives back to 117, setting off the alarm because of the rapid change.

Nurses rush over, determine that the patient (who somehow sleeps through the whole performance) is not having a cardiac event, and reset the machine to shut off the incessant, high-pitched beep-beep-beeping alarm.

Within minutes, the alarm sounds again. Same drill. This goes on all day, all night, the next day and night and the day and night after that. Various nurses coming and going on their particular shift try to fix the problem. They all fail.

The obvious solution is to turn the damned thing off altogether, but that would defeat its purpose and certainly cause some embarrassment if the patient died and nobody noticed his heart stopped beating because the alarm didn't sound.

With the malfunctioning computer just inches from the head of my bed, I'm all for turning it off. By the time I reach 48 hours without more than a few minutes' sleep at a time, I fantasize about strangling the patient in the bed beside me.

I know it's not his fault. I know his computer monitor is to blame. Yet I so badly crave uninterrupted sleep that I cannot think of a good reason to spare this person's life, especially because he sleeps like a baby through the whole thing. Lucky for him, I couldn't get out of bed to save my life.

Nurses work a 12-hour shift for three days, then get four days off, so today there's a new face in Stepdown, Dan, a male nurse who responds, like all the others have, when the alarm sounds next to me for the millionth time.

"Good luck," I grumble, with no attempt to conceal my sarcasm.

"It's fixed," he replies after playing around for a bit in the menu level of the system.

"Yeah, right," I say.

I wait for the alarm to sound. It should happen in a few minutes. All is silent. Can it be? Could this guy have figured out so effortlessly what no one else could manage? I think, Nurse Dan is da man! I think, maybe there is a God. I begin to relax. I feel myself drifting, falling into the arms of Morpheus.

BEEP-BEEP-BEEP-BEEP-BEEP ...

Jesus H. tap-dancing Christ, here we go again. I'm so thoroughly exhausted and angry that I am near tears. 

... BEEP-BEEP-BEEP-BEEP-BEEP ...

I'm going to ask to be moved. No, demand that I be moved, away from this instrument of torture. I'll ask to see a supervisor. I'll threaten to go to the media. I'll call my Member of Parliament, my Member of the Legislative Assembly, I'll write to the Hospital Authority, I'll e-mail the freakin' Premier of the Province, I'll throw my food on the floor.

... BEEP-BEEP-BEEP-BEEP-BEEP ...

And here comes Dan, the smartass who thought he fixed the problem. Oh yeah, he's gonna get a piece of my mind.

"Here we are," he says cheerfully, picking up a little clippy-thingy he sees beside me, on my bed. It's an infrared device to monitor my oxygen saturation, it has a cord leading into my computer, and it's supposed to be clipped to my finger.

Dan replaces it on my finger, resets the computer and all is silent.

"Um, I guess it musta fell off," I say in a small voice. A very small voice. Inwardly, I cringe.



If you don't yet know what trance music is, or even if you do, listen to Ghost in the Machine by Xerox & Illumination, Moshe Keinan and Amir Dvir from Israel. It's the real deal.






the lobectomy papers: part 3

Highs and Lows

This recovery is ever so much more enjoyable than the one in February because my pain is considerably less. Between the epidural-delivered narcotics and Dilaudid pills, I live in a relatively happy, if not befuddled, place. But sadly, as they say, all good things must come to an end.

My blood pressure drops to 78. I explain that I normally have low blood pressure but that doesn't impress anyone. My beloved epidural is blamed for the crash, and the best way to get my blood pressure back to a living, breathing human level is to turn off the narcotic feed for a half hour, then cautiously creep it back up to 3. It was 7 when I was pain-free; talk about separation anxiety.

It doesn't take long for the epidural magic to wear off, and I am not at all appreciating this latest torment, a charlie-horse-like pain, a horrible, seizure-like cramp, that drives like a freight train right through my chest, freezing me in position with a hand pressed to my upper rib cage to hold together what's left of my lungs.

It hits just about every time I try to move, and a few times when I don't. My beloved Dilaudids, 4 mg every three hours, don't even come close to dealing with it. There are groans, there are screams, there are gasps, there are curses. I frighten the visitors.

The most amazing part of this experience is the admission by a doctor that a lobectomy is, "... an extremely painful type of surgery." Wow. I've never heard a doctor say "pain" before. They might mention slight pressure, some discomfort, a bit of irritation and other innocuous sensations, but never the P word. Fine. It's painful. I get that, now please do something about it!

But no, we must run blood tests and a cardiogram because the pain I try to describe sounds to someone like a cardiac event, otherwise known as a heart attack. A cardiac event? That's like calling excrutiating pain "slight discomfort." Oh, wait, they already do that. Perhaps the kinder, gentler term for heart attack was crafted to calm the patient's family, or to reassure his employer that he really can handle that promotion. But, "serious as a cardiac event" just doesn't have the same impact.

I've never had a heart attack, but I know this isn't one. I know that heart attacks don't occur over and over, that they aren't caused by some insignificant movement. I know that, if I was indeed having heart attacks, I would have been stone cold dead hours ago. To add to my frustration, no one is familiar with the term charlie-horse. And no one is going to turn my epidural back on until they've thoroughly checked out my heart.

The Pain Doctor is consulted, and he finally comes up with a drug he thinks is worthy of a try: Gabapentim. It's an interesting drug, used to treat epilectic seizures, bipolar disorder and pain from migrane headaches to degenerative disc disease of the back. It's also interesting that, like love or the economy, no one really understands how it works. We start with 200 mg every three hours.

A perk of living in Stepdown is that everything is brought to you, even the X-ray Dept.

A pleasant technician quietly rolls in a darling, mini, wheeled x-ray machine, lays a lead blanket over the parts of me she's not interested in, steps back behind the machine, calls out, "X-ray!" like you'd call out "Four!" on the golf course, and pushes the button to take a picture.

I'm sure it costs more than my home, my truck, all my computer equipment and all my camera gear but, here it is, another service included in a $165-a-night room. Today I'm finding it difficult to be critical of the Canadian healthcare system.

My cardiogram and blood test results are returned with the verdict that I've not had a heart attack, I mean cardiac event. Gee... ya think?

With the dosage upped to 300 mg every three hours, the Gabapentim is working. The chest charlie-horses lessen until they're gone and my epidural is gradually turned back up to a conservative but civilized 3. Along with 2 mg of Dilaudid every four hours, I'm back to a tolerable level of pain.

My blood pressure never did reach normal range but then, as far as I know, it's never been normal. I doubt that it ever will be, and that's just fine by me. Life wouldn't be nearly as interesting if everything was Normal.

As much as I love Dilaudid, because it's a narcotic, it has certain disadvantages. Narcotics cause constipation. Serious constipation and, unless you've suffered serious constipation, you have no idea of how painful it can be. Now I'm certain why junkies are so skinny. I used to think it was their unhealthy lifestyle, but now I'm convinced it's simply because they don't eat. They're scared to. Scared shitless, you might say, and that's no laughing matter.

Someone in the kitchen has a sense of humour though. Every day, on my dinner tray, appears a small, factory-wrapped package of Black Diamond cheddar cheese. Black Diamond produces a lovely cheddar (I sometimes buy it at home) but, unfortunately, cheddar causes constipation.

It takes every iota of my willpower to stash the package in my drawer rather than rip it open to enjoy right now. That's how bad narcotic-induced constipation is.



"And the doctor said, 'Give him jug band music, it seems to make him feel just fine.'" John Sebastian (Lovin' Spoonful).

the lobectomy papers: part 2

July 22 - Stepdown Unit

The deed is done, the lobe is gone, the sutures tied and the tubes in place. Seemingly only seconds after the general anasthetic knocks me out, I wake up in the Stepdown Unit. The internet said I'd wake up in the Intensive Care Unit (ICU), but there doesn't seem to be one here on the 12th floor Lung Dept. Turns out that a Stepdown Unit is like an ICU, but not quite so intensively caring. This is a good thing. If I don't need intensive care, then I can't be in intensively bad shape.

The Stepdown Unit is a ward of up to ten patients with their own stable of on-site nurses and a variety of frequently visiting doctors and other medical professionals dealing with their particular case.

Today I have six roomies in Stepdown, and they've all undergone some type of major lung surgery. In bed, they're wheeled in, groggy and barely conscious, after their surgery and, when they're improved enough to join the general population, they're wheeled back out the door, bed and all.

Each Stepdown Unit patient is connected to a computer via an assortment of equipment to monitor pulse, blood pressure, heart rate and oxygen saturation. The blood pressure cuff is a permanent fixture, strapped to one's bicep to inflate every hour on the hour for yet another reading. So much for the healing properties of uninterrupted sleep.

At 10:30 a.m. on my second day at the Stepdown Unit, I am bestowed a visit by the Pain Service Doctor. Really, a Pain Service Doctor. Is he going to evaluate my worthiness to be in Stepdown, my worthiness to be served more of that kickass pain medication? Or is he going to order up some new kind of pain for me?

Next, the Social Worker makes her rounds. I think it's interesting that she spends most of her time with patients who already have a solid support network of friends and family, and those of a "spiritual" bent. I suppose this makes it easier for her to apply the basic counselling technique of paraphrasing the patient's words in a positive slant, getting the patient to agree to the new way of looking at their situation.

Social Worker: "Do you have someone to help you with routine household tasks when you go home?"
Patient: "Um, maybe I could ask the neighbour to bring my garbage out to the curb on Thursdays, and my other neighbour might be able to go shopping for me sometimes."
Social Worker: "So I'm hearing you say that you have a reliable and competent support system in place when you go home?"
Patient, visibly perplexed: "Um, well... I guess, if you say so..."
Social Worker, happily checking off a box on her clipboard form: "Great! Now, would you like to talk to a sister from the church?"

Sometime during the flurry of visits from doctors, nurses and others in the helping professions, I find time to take inventory of my condition.

Last time I was here, I was horrified to discover a drainage tube coming from my lung and leading to some unknown recepticle below my field of vision at the edge of my bed. Well, it's baaa-aaack, and it's every bit as Stephen King as the first time. The transparent, half-inch diameter tube regularly gushes bright red blood and gore from somewhere inside my chest. This is something I do not want my visitors to see, and I appreciate that none of them mention it.

Even more disgusting than the drainage tube is the urine catheter tube. Yup, there goes my last shred of dignity, zoom, right out the window, and I didn't even know I had any left. This transparent tube leads to a collection bag that sits at the bottom of my five-footed "Christmas tree," which also holds a collection jar for the other drainage tube and, at top, whatever drugs happen to be dripping into my i.v. at any given time. The urine catheter tube is a frightening half inch in diameter but, on closer inspection and with great relief, I see that the size is greatly reduced before it's taped to my leg and headed into my bladder. Again, thanks to my visitors for not mentioning this.

The third tube is a happy tube. I have a vague idea that an epidural is a procedure specifically for pregnant women, maybe an injection of some kind. I'm in the ballpark but pretty far out in the field.

The epidural is a small catether tube leading into the layer of fatty tissue surrounding the spinal cord. It feeds a regular, pre-measured dose of high-octane narcotic directly into the sweet spot of the nervous system, effectively numbing a large area. Ahhhhhhhh. If I handed out Nobel prizes, the inventor of the epidural would be at the top of my list.

I soon come to realize the containers of red stuff from my lung and yellow stuff from my bladder must be periodically emptied. And measured; the volume of liquid leaving my body apparently indicates something important.

The red stuff is disposed of discreetly, but not so the urine. It's poured into a clear, graduated container for measuring, then carried boldly down to the far end of the ward, to the bathroom. I don't know why the nurses hold this beer-glass sized contained up so high (picture the Statue of Liberty with her torch), but they look for all the world like staff in a busy pub, carrying a glass of Canadian draft to a thirsty patron.

There are certain benefits involved with the nasty catheter. For example, one can drink limitless amounts of fluid without the inconvienience of having to get up to stumble to the bathroom for a pee at 2 a.m. This afternoon I drank several large glasses of ice water, a cup of tea and a container of apple juice with lunch, and finally, later in the afternoon, a large cup of Starbucks coffee. One-point-seven litres of urine is produced while I have not the slightest sensation of a full bladder.

Yesterday, before sending me into Lala Land at the OR, Dr. Evans asked if there was anyone I'd like him to call to report on the surgery. I gave him Gerald's phone number in Port Coquitalm, and I had already instructed Gerald to, at their request, call Jane, Judy, Pat, Billy and Steve.

Today, Dr. Evans tells me that he repeatedly tried the number but was unable to get through. No answer, no answering machine. This is concerning. Gerald does not have an answering machine, but he certainly would have waited for word on my surgery before heading our anywhere. In fact, I remember that he was going to take the day off work to wait for a call.

A nurse was kind enough to try the number for me, again and again, on the Stepdown cell phone, but to no avail. By  3 p.m. I arranged to have a phone by my bed. By 4 p.m. I was wondering who I might call to find out if something has gone wrong. Gerald, if nothing else, is reliable. If he says he'll wait for a call, he'll damn well wait for the call. Understandably, I'm worried.

Then, Gerald strolls into the ward and up to my bed with a cheerful hello, to which I replied, "Where the hell were you!'

"I just got off work."
"Where were you yesterday, when Dr. Evans was calling to let you know how my surgery went?"
In a patient voice, not quite with his eyes rolled up to the ceiling, but close, Gerald says, "You called me yesterday. You told me the surgery went fine. Remember?"

Times like this, I want someplace to hide, someplace dark, quiet and completely out of sight, until everyone forgets my latest faux pas. At least there was a reason for this one: the epidural.

the lobectomy papers: part 1

June 21: Vancouver General Hospital

I'm running late, completing last-minute preparations for a couple of weeks away from home and not expecting to be able to do much when I return home... automatic fish feeder installed in the tank (thanks, Shelley), plants watered, laundry done, recliner chair installed in the bedroom, bills paid (well, mostly), toiletries packed, pyjamas packed, notebook (oldschool type; not the laptop) packed, books and magazines packed.

Twenty minutes behind schedule, we head out the door with Gerald predicting we'll miss the ferry. Not critical, but it would result in a two-hour sit in the Langdale parking lot. Fortune shines upon me though, because the ferry is even later than we are, so we board with no wait. Damn. Although I remembered to wash the laundry, I forgot to throw it in the dryer.

At the VHG Admissions desk, I'm processed and dispatched to my room on the 12th floor of the Jimmy Pattison Pavillion, where all the serious lung cases are kept. I'm an old hand at this, having been here just in February, for wedge resection surgery.

I'm the kid who already has a season of summer camp under her belt, the old con returning for another bit in jail; cocky and comfortable, already looking to claim the best bunk and the best view, looking for a game of cards to pass the time.

My room, shared with Ingrid, is spacious for hospital accommodations by any standards, with a spectacular view of downtown Vancouver with its picturesque, bustling harbour and a backdrop of the moody North Shore mountains. Overhead cranes zig and zag above construction sites, lines of vehicles stop and start at traffic lights, tiny ferries travel back and forth through the waterways.

It looks like a child's playset of miniature cars, busses, buildings, boats and Mechano toy cranes. A tiny helicopter appears over the North Shore, heading south, getting bigger as it gets closer. Now it's a full-sized, for-real chopper thwap-thwap-thwaps its way almost right up to my window. It hovers a moment, then descends to make a perfect landing on a white cross-marked landing pad below. Cool.

My room is in a clean and modern tower in the heart of what's argueably the most beautiful city in the world. It has extraordinary room service and in-house amenitites. How many hotels do you know of that have an operating theatre? The food isn't great, but it's delivered three times a day, while juice, water and snacks are available on demand.

The view? Well, I've told you about the view. This semi-private room is billed, regardless if the patient or their health insurance carrier is paying, at $165 a night. A private room is $195. The Sutton Place is one of the nicest Vancouver Hotels I've stayed in, but I doubt you can get a room under $200 a night. Granted, they have parking, but you have to pay for your own meals. And surgery.

If I'm still here July 1, I'll have a million-dollar view of the city's Canada Day fireworks display over Burrard Inlet.

Vancouver is best known for its Celebration of Light international fireworks show, changed it from Symphony of Fire, presumably to spin attention from the polluting aspect of the days-long pyrotechnical orgy, not to mention the fire hazard in the hottest, driest time of year.

But, we love our fireworks. Even a smug, vegan, tree-hugging and hybrid-driving citizen of the planet and champion of Mother Earth looks the other way at the expense, the noise and chemical fallout of their beloved fireworks.

Admiring the view is interrupted by a visit from my first cousins, Russell and Brian Doyle, and Brian's wife, Pam. It's okay, paramedics have already transported the patient from the helicopter into the bowels of Vancouver General and the chopper has thwap-thwapped up, up and away, over the harbour and North Shore mountains, looking like it's headed to the Sunshine Coast, maybe even my home of Pender Harbour. I fantasize about being onboard, not facing surgery in the morning.

I'd never met Russell before; in fact, I didn't even know he existed. Such is the nature of my family. We don't waste a lot of time keeping in touch, so visits like this are really appreciated. Rusell contacted me a few weeks ago because an uncle died without a wife, family or will, and so all the family members had to be notified for Kimble's estate to be distributed amongst the children of his siblings, according to Canadian estate law. Kimble and his siblings numbered 12, not unusual for a Roman Catholic family in northern New Brunswick not long after the turn of the 20th century, so I doubt I'll get enough to pay off my Master Card.

Russell is in Vancouver on a brief layover, heading to the Land of the Midnight Sun to take part in the Whitehorse 24 Hours of Light mountain bike festival. He also runs, so I know he's not a smoker. Genetics is interesting. Most of the Doyles drink alcohol in that good old Irish tradition, but not all of them in my generation are stupid enough to still be smoking. Russell and Brian are my cousins though, there's a peculiar sense of familiarity when I talk to them, like looking into my mother's dark brown eyes.

Russel leaves, off to catch his plane to the Yukon, Brian and Pam leave, and Gerald leaves. I'm left with my books and thoughts, trying not to recall those lobectomy images and descriptions I found on the internet.